How many affected

[Buster]

The principal at our school doesn't believe in PANDAS regardless of the amount of material we present to her. It hasn't mattered that we've got extraordinary documentation, diagnosis from a world-class psychiatrist, testing by the school psychologist, daily logs of handwriting changes, etc. At first I thought it was the principal just dealing with the reality of an underfunded school budget and not wanting us to use IEP resources for a kid who can't do math or spell but otherwise excels. Later we discovered it was more personal opinion -- she believed what she had experienced and thought it was just under-parenting or a defiant kid. Arggh, so incredibly annoying.

 

After we had IVIG and our dd9 dramatically improved, the principal commented at the IEP meeting that the skill of the teachers had helped our daughter improve. Part of me was agreeing with her -- I'm glad for the great teachers, but another part was "you idiot, can't you see that her symptoms improved after we addressed the anti-neuronal antibodies."

 

I don't think I'll ever convince her -- and I had to remind myself I didn't really have to -- it's just annoying. I'd think the school nurse should culture each kid that goes to the principal's office

 

Buster

 

 

Buster we really appreciate all of the effort you put into PANDAS. I especially appreciate this post as I've had yet another week of 'breaking in new people' at the school distsrict. Just when you get one teacher or principal or administrator straightened out on the whole deal, there's a shift such as a new semester or people changing positions. I feel like a broken record. You get tired of the 'well I've never heard of such a thing'. Oh, well then, it must not be true if YOU have never heard of it!!!

It's not really THAT UNCOMMON.

[Stephanie2]

Let me guess, your principal is probably between the ages of 55-65? The older generation just doesn't buy into this stuff b/c they have been so "indoctrinated" to believe that if you have bipolar...then you have bipolar and you need a mood stabilizing med. And if you have depression, then you need an antidepressant b/c you have a "chemical imbalance". Not to mention the older generation thinks that if your kid is unruly then u are just an awful parent. And then there is the issue of increased vaccines and the increase in special needs diagnoses (don't mean to start a big controversy, just my opinion b/c I watched both kids regress after vaccines). They have not experienced this level of special needs before and they think that we, the parents, are just a generation of screw-ups who don't know how to parent.

 

I could be wrong about your principal's age and I could be overgeneralizing about the older generation and their beliefs, but your post struck a sore spot for me b/c this is my own mom's attitude which has caused a major divide in our relationship and I can't even leave my kids with her b/c she calls my son an idiot when he rolls around the floor having tics. She REFUSES to accept ANY of his diagnoses. And if IVIG cures him, she will just say that he grew out of it. Oh, and my younger son acts like his older brother b/c he is learning bad behavior, NOT because he also has PANDAS (sarcasm, here)! How can it be possible that they BOTH have PANDAS???!!! And it doesn't matter that they were each diagnosed by a different doctor, each of which did not know that the other sib had PANDAS! What are the odds that that would happen and that both docs are wrong about both kids??? But that doesnt' matter to my mom. UGH!

 

OK, a little off-topic. Just sent me off on a tangent...

 

Anyway, I guarantee that HUGE numbers of PANDAS/PITAND exist. It won't be until the Cunningham test becomes mainstream that we will possibly be able to know just how big it is (so many ppl get the strep titer test and then dismiss it when they come back low/negative, like my son's). And then someone like Dr. K needs to step up and educate HUGE numbers of docs around the country or most people will be spinning their wheels trying to diagnose/treat it. There is a huge lack of a "standard of care" when it comes to pandas.

 

Stephanie

 

The principal at our school doesn't believe in PANDAS regardless of the amount of material we present to her. It hasn't mattered that we've got extraordinary documentation, diagnosis from a world-class psychiatrist, testing by the school psychologist, daily logs of handwriting changes, etc. At first I thought it was the principal just dealing with the reality of an underfunded school budget and not wanting us to use IEP resources for a kid who can't do math or spell but otherwise excels. Later we discovered it was more personal opinion -- she believed what she had experienced and thought it was just under-parenting or a defiant kid. Arggh, so incredibly annoying.

 

After we had IVIG and our dd9 dramatically improved, the principal commented at the IEP meeting that the skill of the teachers had helped our daughter improve. Part of me was agreeing with her -- I'm glad for the great teachers, but another part was "you idiot, can't you see that her symptoms improved after we addressed the anti-neuronal antibodies."

 

I don't think I'll ever convince her -- and I had to remind myself I didn't really have to -- it's just annoying. I'd think the school nurse should culture each kid that goes to the principal's office

 

Buster

 

 

Buster we really appreciate all of the effort you put into PANDAS. I especially appreciate this post as I've had yet another week of 'breaking in new people' at the school distsrict. Just when you get one teacher or principal or administrator straightened out on the whole deal, there's a shift such as a new semester or people changing positions. I feel like a broken record. You get tired of the 'well I've never heard of such a thing'. Oh, well then, it must not be true if YOU have never heard of it!!!

It's not really THAT UNCOMMON.

Edited April 16, 2010 by Stephanie2

[Buster]

Strangely enough she is in her late 30's/early 40's, but I think is just someone who works from experiences not from books or theories. She does okay when she can see someone with a broken leg or in a wheelchair or has a severe tic. It took me 4 meetings to realize I wasn't going to convince her with words and that to some degree it didn't matter.

 

Buster

 

Let me guess, your principal is probably between the ages of 55-65? The older generation just doesn't buy into this stuff b/c they have been so "indoctrinated" to believe that if you have bipolar...then you have bipolar and you need a mood stabilizing med. And if you have depression, then you need an antidepressant b/c you have a "chemical imbalance". Not to mention the older generation thinks that if your kid is unruly then u are just an awful parent. And then there is the issue of increased vaccines and the increase in special needs diagnoses (don't mean to start a big controversy, just my opinion b/c I watched both kids regress after vaccines). They have not experienced this level of special needs before and they think that we, the parents, are just a generation of screw-ups who don't know how to parent.

 

I could be wrong about your principal's age and I could be overgeneralizing about the older generation and their beliefs, but your post struck a sore spot for me b/c this is my own mom's attitude which has caused a major divide in our relationship and I can't even leave my kids with her b/c she calls my son an idiot when he rolls around the floor having tics. She REFUSES to accept ANY of his diagnoses. And if IVIG cures him, she will just say that he grew out of it. Oh, and my younger son acts like his older brother b/c he is learning bad behavior, NOT because he also has PANDAS (sarcasm, here)! How can it be possible that they BOTH have PANDAS???!!! And it doesn't matter that they were each diagnosed by a different doctor, each of which did not know that the other sib had PANDAS! What are the odds that that would happen and that both docs are wrong about both kids??? But that doesnt' matter to my mom. UGH!

 

OK, a little off-topic. Just sent me off on a tangent...

 

Anyway, I guarantee that HUGE numbers of PANDAS/PITAND exist. It won't be until the Cunningham test becomes mainstream that we will possibly be able to know just how big it is (so many ppl get the strep titer test and then dismiss it when they come back low/negative, like my son's). And then someone like Dr. K needs to step up and educate HUGE numbers of docs around the country or most people will be spinning their wheels trying to diagnose/treat it. There is a huge lack of a "standard of care" when it comes to pandas.

 

Stephanie

 

The principal at our school doesn't believe in PANDAS regardless of the amount of material we present to her. It hasn't mattered that we've got extraordinary documentation, diagnosis from a world-class psychiatrist, testing by the school psychologist, daily logs of handwriting changes, etc. At first I thought it was the principal just dealing with the reality of an underfunded school budget and not wanting us to use IEP resources for a kid who can't do math or spell but otherwise excels. Later we discovered it was more personal opinion -- she believed what she had experienced and thought it was just under-parenting or a defiant kid. Arggh, so incredibly annoying.

 

After we had IVIG and our dd9 dramatically improved, the principal commented at the IEP meeting that the skill of the teachers had helped our daughter improve. Part of me was agreeing with her -- I'm glad for the great teachers, but another part was "you idiot, can't you see that her symptoms improved after we addressed the anti-neuronal antibodies."

 

I don't think I'll ever convince her -- and I had to remind myself I didn't really have to -- it's just annoying. I'd think the school nurse should culture each kid that goes to the principal's office

 

Buster

 

 

Buster we really appreciate all of the effort you put into PANDAS. I especially appreciate this post as I've had yet another week of 'breaking in new people' at the school distsrict. Just when you get one teacher or principal or administrator straightened out on the whole deal, there's a shift such as a new semester or people changing positions. I feel like a broken record. You get tired of the 'well I've never heard of such a thing'. Oh, well then, it must not be true if YOU have never heard of it!!!

It's not really THAT UNCOMMON.

[sf_mom]

Millions more than we are currently aware. I feel like I'm being bombarded by parents most recently suspecting something is really wrong and not understanding what with their children. Most have some of the symptoms and lack sudden on-set. Its frighten to me 'what might' happen to these children.

[Athena]

Dear Buster,

 

When I researched PANDAS last December, I ended up putting journal articles into three separate piles: editorials/opinions, studies that compared PANDAS kids to kids with OCD or Tourettes, and studies that compared PANDAS kids to kids who got strep but not PANDAS. Those who presume PANDAS (and PITAND) must be rare probably start with the assumption that this is a special case of OCD or some other specific disorder. Each set of symptoms for a specific disorder presents a restricted range of possible PANDAS cases. Although I was stunned by my own child's presentation, I felt early on that his OCD, tics, neurological impairments, etc. were symptoms of PANDAS and not the other way around.

 

If the starting point is 42 million kids, and 1 in 7 have an active strep infection at any point between Oct. and April ("strep season"), then 6 million kids have had strep at least once this school year. It seems reasonable that "less than 6 million kids" develop PANDAS each year. (PITAND is harder to estimate, since there seem to be so many different antigens involved here.) I'd guess that somewhere between 5% and not more than 20% of all strep cases develop into some type of PANDAS (300,000 to 1.2 million kids!). Of these, some kids may have only one episode before reaching puberty and maybe they don't ever have a noted exacerbation. Some kids may only develop ADD or tics or AN or OCD behaviors. And other health issues may make PANDAS really difficult to detect. So, conservatively, 300-500k "straightforward cases" that could be diagnosed this year sounds about right to me.

 

That said, Sydenham's Chorea and Rheumatic Fever are relatively rare complications of strep. So perhaps the lower end of the range should be set at the rate for these strep-related illnesses.

 

Does this help at all?

 

Athena

 

 

 

 

I was wondering if anyone has run across any sampling data to indicate how many kids might have PANDAS or PITAND.

 

Trying to triangulate the number, I started with population of children in US

• Age 5-14 was around 42Million in the US
  
• OCD estimates for children are 1%-2.3% -- or approx 1M kids
  
• Tic estimates are about the same (1%-2%) so call this another 1M kids -- of course there's some overlap
  
• The episodic type of OCD with minimal/no symptoms in remission is estimated by DSM-IV-TR at 5% -- so around 100,000 kids
  
• Swedo indicates that perhaps as high as 25% of OCD is PANDAS -- makes the average 100,000-250,000
  

Buster

 

P.S. I added final bullet in edit after peglem's post... Also others highlight that we probably are way underestimating because of the number mislabeled with Autism, or Defiance disorder, or ADD, or ...

[Joan Pandas Mom]

Buster, do you mean 4.2 million?

I was wondering if anyone has run across any sampling data to indicate how many kids might have PANDAS or PITAND.

 

Trying to triangulate the number, I started with population of children in US

• Age 5-14 was around 42Million in the US
  
• OCD estimates for children are 1%-2.3% -- or approx 1M kids
  
• Tic estimates are about the same (1%-2%) so call this another 1M kids -- of course there's some overlap
  
• The episodic type of OCD with minimal/no symptoms in remission is estimated by DSM-IV-TR at 5% -- so around 100,000 kids
  
• Swedo indicates that perhaps as high as 25% of OCD is PANDAS -- makes the average 100,000-250,000
  

Buster

 

P.S. I added final bullet in edit after peglem's post... Also others highlight that we probably are way underestimating because of the number mislabeled with Autism, or Defiance disorder, or ADD, or ...

[Buster]

Actually no I meant that there are 42Million (going by 2000 census) -- although I see by the 2008 census that number has grown to 57M for the age group 5-13

 

http://www.census.gov/popest/states/asrh/t...-EST2008-01.xls

 

Buster

 

Buster, do you mean 4.2 million?

I was wondering if anyone has run across any sampling data to indicate how many kids might have PANDAS or PITAND.

 

Trying to triangulate the number, I started with population of children in US

• Age 5-14 was around 42Million in the US
  
• OCD estimates for children are 1%-2.3% -- or approx 1M kids
  
• Tic estimates are about the same (1%-2%) so call this another 1M kids -- of course there's some overlap
  
• The episodic type of OCD with minimal/no symptoms in remission is estimated by DSM-IV-TR at 5% -- so around 100,000 kids
  
• Swedo indicates that perhaps as high as 25% of OCD is PANDAS -- makes the average 100,000-250,000
  

Buster

 

P.S. I added final bullet in edit after peglem's post... Also others highlight that we probably are way underestimating because of the number mislabeled with Autism, or Defiance disorder, or ADD, or ...

[Joan Pandas Mom]

Thanks Buster, I CANNOT BELIEVE how many kids are suffering. I am so happy word is getting out. My Pedi thinks IVIG is, "Way out there." He needs to wake up.

 

quote name='Buster' date='Apr 20 2010, 12:27 AM' post='63964']

Actually no I meant that there are 42Million (going by 2000 census) -- although I see by the 2008 census that number has grown to 57M for the age group 5-13

 

http://www.census.gov/popest/states/asrh/t...-EST2008-01.xls

 

Buster

 

Buster, do you mean 4.2 million?

I was wondering if anyone has run across any sampling data to indicate how many kids might have PANDAS or PITAND.

 

Trying to triangulate the number, I started with population of children in US

• Age 5-14 was around 42Million in the US
  
• OCD estimates for children are 1%-2.3% -- or approx 1M kids
  
• Tic estimates are about the same (1%-2%) so call this another 1M kids -- of course there's some overlap
  
• The episodic type of OCD with minimal/no symptoms in remission is estimated by DSM-IV-TR at 5% -- so around 100,000 kids
  
• Swedo indicates that perhaps as high as 25% of OCD is PANDAS -- makes the average 100,000-250,000
  

Buster

 

P.S. I added final bullet in edit after peglem's post... Also others highlight that we probably are way underestimating because of the number mislabeled with Autism, or Defiance disorder, or ADD, or ...

[Johnsmom]

Most have some of the symptoms and lack sudden on-set.

 

SF Mom-

 

My child is one who has some symptoms and lacks the sudden on-set criteria. I wish more parents would scream a little louder on this post about their childs lack of sudden onset or too early to tell situation. My son started the steroid burst on April 1st. He was already in a good spot as far as behaviors so I was worried as to what we were going to see, if anything. Oh Boy!!!! Its been incredible.

 

I worry too. Dr K told me that PDD NOS is a garbage diagnosis and I totally believe him.

 

Let me hear from the parents who fit this!! Maybe I have to start a new topic.

 

johnsmom

 

 

 

 

 

 

Millions more than we are currently aware. I feel like I'm being bombarded by parents most recently suspecting something is really wrong and not understanding what with their children. Most have some of the symptoms and lack sudden on-set. Its frighten to me 'what might' happen to these children.